We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…
Little man has another development milestone coming up, going to nursery.
It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.
Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.
He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.
To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).
I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:
I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.
I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)
Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!
I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.
I’d love to hear how you tackle development milestones (no chronic illness required).
Our helpline not only attracts people from the UK, but we also chat with many people from overseas via our live webchat facility. This is great, as it allows those in different time zones to contact us if they need to talk.
Another service that complements this nicely is our telephone interpretation service.
This service is not just available for those contacting us from overseas, but for those based within the UK, whose English is limited.
Whilst using the interpretation service, in order to communicate with clients we use a values led, non-for-profit business. This covers over 100 languages, all interpreters are fully qualified and based in the UK.
All interpreters are experienced in working with sensitive issues and all have Disclosure and Barring Service clearance. This gives another layer of protection to our clients.
So, how does our telephone interpretation service work?
The service is straight forward and simple. Once contact has been made with the MS-UK Helpline, all we need to know is your
We will then make contact with an interpreter who will get back to you as soon as possible. You will then be connected to a three way conversation between yourself, the interpreter and a member of our helpline who will give you the support you need.
Tomorrow is the last chance to take our survey all about the MS-UK Helpline, and let us know your opinions if you have used the helpline at all in 2017.
We would like to know why you chose the MS-UK Helpline, whether or not you found the information and support from our team useful and your opinions about our opening hours and accessibility.
This survey is for people who have used the MS-UK Helpline this year (2017). By completing this survey, you are helping us to improve the MS-UK Helpline in the future, so your feedback is invaluable!
As a thank you for sharing your thoughts, one lucky person will be selected at random to win a £50 Love2Shop voucher!
The closing date for this survey is tomorrow (09 August 2017), so don’t delay!
Thank you – and good luck!
Diana Baxter, Head of Services
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at firstname.lastname@example.org
This month sees World MS Day (Wednesday 31 May), and here at MS-UK we will be celebrating throughout the day on Twitterand Facebook, to raise awareness of multiple sclerosis and hopefully share some top tips from you!
Got some inspiration for how to handle incontinence? Know a great way to ease neuropathic pain? Whatever your top tip for living life with MS, we want to hear from you!
We will be using the hashtag #LifewithMS throughout the whole day, so do join in!
I look forward to sharing your tips on the day, and thanks for being part of the conversation,
Digital Officer, MS-UK
We wanted to let you know about our latest survey…we would like to know your thoughts about our Helpline opening hours.
Currently the MS-UK Helpline is open Monday to Friday 9am to 5pm and is available via the freephone telephone number (0800 783 0518), live web chat or email.
The Helpline is staffed by trained advisors (that’s us!) to offer all the information you may need to make your own decisions.
We are reviewing our opening hours and exploring whether there is demand for us to extend those hours to provide a service through existing and maybe new channels.
Please take the time to complete our survey to help us to make plans for the future.
Thank you so much for helping us with this research, your opinion will help us shape this service for the future!
Kim, Ryan and Laura
The MS-UK Helpline team
Last year we launched our 'Getting to know you' survey, asking questions all about yourself - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we don't ask you for any contact details at all.
The reason we do this is because we really like to know about the people we're supporting. MS-UK puts people affected by multiple sclerosis at the heart of our work, and we want to be able to provide services that really meet your needs. We also want to make sure we're reaching as many different people as possible.
You can take part in our survey online today - it shouldn't take you more than ten minutes. If you would like a paper copy, please do email me or call 01206 226500 and I will send you one in the post.
Thanks for your help with this,
NICE are reviewing the way they involve lay people in developing their guidance and standards. In this context, lay people are people who are not health or social care professionals.
NICE are carrying out a consultation on improving how patients and the public can help develop NICE guidance and standards. NICE want to hear your views on their proposed new principles and ways of working.
How to have your say
The consultation closes at 5pm on 28 February 2017.
Following the consultation, NICE will analyse all the comments and respond to them by theme. NICE will publish their final proposals on their website following the consultation.